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Sara Porzio details the work involved in sourcing a suitable autism day service for her daughter, and the disappointment in finding it removed at the last minute. She questions whether the health service values all people equally.

Francesca left school in June 2016 but her mother was shocked to discover that accessing a post school placement, in spite of the promises of politicians,  will not be easily achieved.
Sara Porzio, Francesca’s mother, contrasts how her daughter’s experience is so different for those students awaiting confirmatiion of their third level place and if disappointed in their first choice –  other choices are available.

7 - Sara Porzio - Autism Services Frontline article Sept 2015

My daughter Francesca has autism and graduated from St Paul’s Special School in June of this year.  In 2013, I had contacted our local Disability Manager.  She told me that the school and the family would have to identify a service that best suited her needs, and that Francesca would be listed for a day service placement in 2015.  Having discussed it with all concerned, we decided upon Gheel Autism Services.  We felt it would be an ideal, nurturing environment for her.  They have various small settings called “hubs” within our local community.  She would continue to learn and work towards more independent living skills, the service was for life and it would evolve as her circumstances changed.  We were very happy with our choice.

In February 2015, she was assessed at home by Gheel and we were told she would commence the new service on the 1st September 2015.  Gheel then arranged for their psychologist to come to the school and see Francesca and the other three pupils who would be joining her.  They also arranged for the pupils to visit a hub so that they could see it for themselves.  Having struggled since her diagnosis to access first a primary and later a secondary school, I was delighted everything was at last going so smoothly.  Having been involved in groups for people with special needs over the years I had knowledge of the difficulties other parents faced in accessing services in the past.  I foolishly thought we were the lucky ones.

Late May we had the first indication that storm clouds were gathering.  We received a letter from Gheel Autism Services stating that the HSE had not been in contact with regard to the funding and that a starting date of the 1st September was unlikely.  I contacted the HSE and was told there was a problem with the funding, and that service providers would not get notice of funding until late June.  On the 30th June we, along with 24 other families, were called to a meeting in Gheel’s office and were informed that due to a shortfall in funding they would not be in a position to offer us a day service.  We left the meeting that evening reeling with shock.  Outside the building the parents gathered together, united in our disbelief at the turn of events.  We hurriedly exchanged phone numbers, promising that we would all contact our local political representatives.

The summer passed in a haze of emails and visits to politicians’ clinics.  All to no avail.  Up to this point, we had been assuring Francesca that she would be starting her service on the 1st September.  She loved school and we wanted the transition between leaving school and beginning a day service to be seamless.  The HSE assured us that talks were ongoing and they were confident some agreement could be reached.

On the 14th August, two weeks before her starting date, we received a phone call from the HSE informing us that Gheel Autism Services were no longer an option and that the assessments were being passed to another autism service provider.  The Disability Manager told us that, realistically speaking, we would not have a day service until 2016.  The proposed service provider is based in Wicklow.  All the school leavers are from the north side of Dublin.  Their intention is to set up a service on the north side of Dublin but as yet have no staff or premises.  This is not the service I researched – this is not our choice for Francesca.  A service is being cobbled together at breakneck speed with reduced funding.  Nobody can answer questions as to what type of service it will be, where it will be, how many hours she will spend there because nobody knows.  Francesca will just have to wait while the HSE tries to sort out this debacle.

We did all we had to do within the correct timeframes.  The fact that these young adults were leaving school should not have been a surprise to the HSE.  On April 16th this year, the Minister of State at the Department of Health with special responsibility for Primary Care, Social Care (Disabilities & Older People) and Mental Health, Kathleen Lynch TD stated in the Dáil that “As long as I have been in politics there was a crisis-driven approach with people with disabilities coming out of training or school having nowhere to go in September.  We did not have such a situation last year and we will not have it this year”.  I foolishly believed this empty promise.

Francesca cannot leave the house unaccompanied.  She cannot be left at home unattended.  She is lonely and asking for school each day.  It is difficult to explain the situation to her.  The parents of the twenty-four school leavers have come together as a group to try and be involved in the decisions that are being made behind closed doors for our children.

The overall feeling at this turn of events is helplessness.  I wanted so much for the move from school to adult services to be easy for Francesca.  Just after we discovered she would have nowhere to go in September, the Leaving Cert Results were announced.  On the radio, representatives from the National Parents Council advised pupils not to worry if they didn’t get their first choice of college; there were always alternative solutions and various ways to access their goals.  I felt deeply that day that my daughter counted for less than a “normal” school leaver.  There was nobody from the Parents Council to advise us on choices.  The truth is they couldn’t advise if they wanted to as, while other school leavers have a myriad of choices, Francesca has none.  In the recent referendum there was much talk of equality and how much politicians valued it.  There is no equality for my daughter.

If you wish to contact the parents’ support group you can do so via their Facebook page “Gheel 2015 Parents Support Group“.

Author Bio

Sara Porzio is a working mother living in Artane in Dublin.  She has three children.  Francesca, aged 18 years, is her only daughter.

Clare Hudson examines a number of devices and applications designed to assist and develop technology skills for people with disabilities.

Clare Hudson examines a number of devices and applications designed to assist and develop technology skills for people with disabilities.

For many people, devices such as iPods and iPads have become an extension of their arm.  They give us so much at the touch of a screen.  They keep us up-to-date on the everyday movements and special events of those who may not be in close proximity (or, in some cases, may be!), and on news from around the world.  They provide all sorts of on-the-spot entertainment from music to DVD, games to virtual worlds.  And no matter what the issue or problem someone always knows of ‘an app for that!’  This development in the technological world has brought with it fantastic opportunities, particularly in the area of support and development of communication skills.

There are so many options that it’s hard not to feel like the proverbial ‘kid in a candy store’ when we browse our ‘local’ app store (without even having to leave the house!)  But the sheer volume of options can quickly become overwhelming and it can often be daunting to know where to start; how to know what you or your child would benefit most from, what type of devices and apps would be appropriate and how to begin using the app.  This article aims to point you in a helpful direction with these decisions and dilemmas, discusses how technology can be used for social connection, and finishes with an example of how technology in the form of Skype has been used in an innovative way to connect and provide support for teenagers who stammer.

Techie Words: What the words mean

Advances in technology have brought us a new vocabulary.  I for one am guilty of using ‘techie words’ without really understanding what I’m saying, always to be caught out in the mobile phone shop when I realise I am unable to fully participate in the conversation I have started.  So, I am going to provide a quick reminder of what I think I mean by a few ‘techie’ words that will be used in this article.

‘App’ is short for “application”, which refers to a software application or a software programme used on a smartphone or mobile device such as the Android, iPhone, iPad or iTouch.

‘Android’ is an operating system for mobile phones and tablets, in much the same way that PCs run Microsoft Windows as their operating system. It is maintained by Google.

‘Tablet’ refers to a tablet computer; a mobile computer with a touch screen display, circuitry and battery in a single device. iPad by Apple is a type of tablet device.

Choosing technology: Where to start?

  1. Decide on the purpose of the device or app

Devices and apps are available to support education, leisure skills, communication, independent living, social skills and employment.  Determine whether the focus is to support the individual’s language and communication skills, or to teach numeracy or literacy, or indeed to provide an activity in which the individual can engage independently for a period of time (e.g. a game or a film).

Figure 1 outlines some of the areas of communication that can be supported and developed through the use of technology.

table 1

Figure 1: Elements of Communication which can be supported through use of technology

*AAC: Alternative and Augmentative Communication includes all forms of communication (other than oral speech) that are used to express thoughts, needs, wants, and ideas.  Voice Output Communication Aid (VOCA) is an aided AAC system as it is a device in addition to the users’ body.

  1. Match the capabilities and needs of the user/individual to the features of the device/app

Factors to consider when choosing a device/ tablet include

  • screen size,
  • durability,
  • screen glare,
  • volume,
  • weight

Factors to consider when choosing an app to use include

  • the picture or symbol system used and whether and how easily the system can be personalised with photographs,
  • the ability to change the grid size (number of symbols/pictures on a page),
  • the presence or absence of a voice output,
  • the layout of the folders,
  • the capacity for language development.
  1. Identify and include an appropriate instructional approach as part of the intervention package, as this is required to enhance communication

AAC users and communication partners (the person(s) with whom we communicate) benefit from support and training to use specific techniques and strategies to maximise the benefits and effectiveness of AAC.  Likewise it is important to think about what the communication partner can do to support the user to use an app or technology to transition or complete a task more independently.

Wading Through the Apps

There are thousands of apps available to support and develop communication skills, so that the search for the right app can seem overwhelming.  I have found some of the following websites and resources useful in my work and others have been recommended to me:

http://www.dart.ed.ac.uk/asdtech/app-reviews/

On this website, apps are organised in sections relating to their general purpose (e.g. communication, education, fun, life skills) in an interactive ‘app wheel’ (last updated in April 2015, see Figure 2).  The website allows the user to click on each app icon to find out more about the app. This website also publishes regular app reviews which aim to provide an evidence-based perspective on apps for autism.

table 2

Figure 2: Interactive app wheel compiled by Sue Fletcher-Watson.

Mark Coppin has also developed an ‘Apps for ASD’ wheel identifying the features that are important when choosing a suitable app. This can be viewed at https://itunesu.itunes.apple.com/audit/COH3CQR8H2

For AAChttp://aactechconnect.com/wp-content/uploads/2011/07/Apps-SummarySummer-6.10-14..pdf  provides a list of AAC apps, including information about key features of each app, which will help in discussions with the speech and language therapist as to an app that might best meet your AAC needs.

A fact sheet about iPad and Tablet apps has been published by I CAN, the children’s communication charity, at

http://www.ican.org.uk/~/media/Ican2/What%20We%20Do/Enquiry%20Service/Apps%20factsheet.ashx

Apps relating to the various areas of communication including language, speech, emotions, social communication and organisation are outlined in an easy to read table which includes the price and comments about the app.

In my experience, many apps are regularly updated as a result of both user feedback and further advances in technology.  An example of this is in visual schedule/organisation/social story apps.  Where once these apps were personalised through use of photographs, they can now be personalised through use of video of the individual completing the task, or steps in the task.  Planned use of videos is known as ‘Video Modelling’ and ‘Video Self-Modelling’ and have been found to be effective means of skill acquisition, maintenance and generalisation for individuals with ASD (Bellini & Akullian, 2007).

Apps vary in price; some are free with others being relatively expensive.  Many apps offer a ‘lite’ version, which is a free taster of the app and others offer a free trial period of the app. Trials and ‘lite’ versions can be a very effective part of the decision-making process to know if the app is the right one for you at the moment.  In addition, there are a number of websites, blogs or forums on which parents and app users provide reviews and personal accounts of their use of the apps.

Getting Going

Apps as VOCAs

If technology is being used as a VOCA it is advisable that parents, the device user and the speech and language therapist work in partnership to identify and plan when the device will be used, with what vocabulary and the role of the communication partner (the listener) during interactions.  ‘Augmented input’ (Elder & Goosens, 1994 cited in Mirenda, 2001; Cafeiro, 2005) is an approach advocated by many in the field of AAC that involves the communication partner simultaneously touching the corresponding symbols to his/her spoken words as they are spoken.  This provides a model to use the VOCA.  Alternatively, some apps have specific instructional packages in which the communication partner is less actively involved.  Regardless of the instructional approach, integration of the VOCA into an individual’s everyday activities has been shown to lead to the most successful outcomes for functional communication (Beukelman & Mirenda, 2005).  In terms of evidence-based practice, various analysis of research into the use of technology such as iPad and iPod to enhance the communication of individuals with developmental difference such as ASD has shown favourable outcomes (e.g., Kagohara et al., 2013; Alzrayer et al., 2014)

Apps for Interaction & Leisure

We know that individuals learn best when they are interested and engaged in an activity.  If tablet technology and apps are attractive and engaging for you or a family member, it is important for communication partners and practitioners to use this interest to foster and build communication and interaction skills, even if this is not the advertised purpose of the app.  It is worth considering “The 7 Ps of Using Mobile Technology in Therapy” (DeCurtis & Ferrer, 2011) as a guide to help to maximise interaction and communication with the device or app in everyday situations. The 7 Ps are:

  1. Preparation: What is the rationale behind using an app versus using actual books/toys?
  2. Participants: Consider characteristics of the child using the device/app
  3. Parameters: What is the appropriate amount of time for the child to spend using the device?  Might the device interfere with naturally occurring communication at times?
  4. Purpose: What is the advertised purpose of the app? How can this app meet a child’s goals (by means of this purpose or using the app in an alternative way)?
  5. Positioning: How and where should you position the child and/or yourself to maximise interaction and communication?
  6. Playtime: How will you and your child experience shared enjoyment with the app?
  7. Potential: How will you extend and expand the learning gained from using an app to real-life experiences and to support future learning?

For more information on “The 7 Ps”, see http://pampclub.org/site/2011/07/01/maximizing-mobile-technology-with-toddlers-preschoolers .

Managing Time with the Tablet

As with all exciting developments comes caution.  Learning and interacting through technology alone may not always provide everything a child needs for development; variety of learning opportunities should be encouraged.  Many parents, however, have discussed how it can be difficult to limit time with technology.  The National Autistic Society (www.autism.org.uk/technology) suggests ways to manage the amount of time and quality of time a user spends with portable technology.  The suggestions include:

– Use the child’s routine to make the technology available at specific times;

– Use the battery life icon;

– Use an online timer;

– Use different coloured cases when using the device for different purposes.

Technology for Social Connection

Social media such as Facebook and Twitter and online communities are increasingly used as a means of staying connected with friends and families, creating new relationships with like-minded individuals and exploring topics and dilemmas in an undisclosed manner.  The face-to-face element of social communication can be eliminated in communication via technology.  For some individuals for whom initiating and maintaining conversation can be a daunting task, social media can allow a greater sense of control over the conversation, more time to process what has been ‘said’ and what to ‘say’, and avoids the need to process the non-verbal messages that come with face-to-face interactions. Within the literature on the use of technology by individuals with ASD, the themes that emerge relate to the sense of empowerment  and social connection experienced by people using technology as a medium for communication as well as the voice given to this community (Byrne, 2013; Davidson, 2008).

“Technology doesn’t mean sitting alone in a darkened room any more, and the line between technology and ‘real life’ is disappearing” (NAS, 2015, www.autism.org.uk/technology).

‘Cyber safety’ is an important element of any online activity. It is critical that internet users are aware of the dangers that exist when talking online and learn to be cyber safe.

Technology and Innovative Practice

Advances in technology also provide a challenge to the teams working with individuals with communication needs and their families.  Many practitioners are involved in innovative practice using technology.  An example of this can be found in the work of The Irish Stammering Association, which runs an online support group for teenagers who stammer.  Callum Wells, Speech and Language Therapist, explains below how the online group works including feedback from participants:

Irish Stammering Association runs a monthly online support group for teenagers who stammer. The group aims to provide a place for teenagers who stammer from all over Ireland to meet, chat and share experiences online. The group uses Skype to connect to a video conversation. The group is facilitated by speech and language therapists but the young people discuss topics of interest to them. The group was established in early 2014 and members hail from various parts of the country. Feedback from members has been positive: “I get to talk to people and I don’t [need to] think about my speech”, “I’m going out of my comfort zone…it’s a good thing and helpful” and “the call reminds me about techniques”. As a group facilitator, I have enjoyed being part of the discussion on stammering and have been impressed by the willingness of people to share experiences and support each other. A variety of topics have been discussed ranging from stammering to X-Factor contenders, which allowed for a more free-flowing and fun conversation. I hope that more young people from different parts of the country will participate in upcoming groups and that they will be empowered from group support.

Callum Wells’ contact details: mail@stammeringireland.ie

Final Thoughts …

Advances in technology have brought new opportunities to support, develop and enhance communication skills.  This technology may be life-changing for some families but it is rarely the answer to all the communication needs of an individual.  Communication is by definition an interactive process where messages are sent between a speaker and a listener.  The listener is vital to the further development of communication skills, even with the addition of a device or app.

References:

Alzrayer, N., Banda, D., & Koul, R., (2014) Use of iPad/iPods with Individuals with Autism and other Developmental Disabilities: A Meta-analysis of communication Interventions

Bellini, S., & Akullian, J., (2007) A Meta-Analysis of Video Modelling and Video Self-Modelling Interventions for Children and Young People with Autism Spectrum Disorders, Exceptional Children, 73, 261-284

Beukelman, D.R., & Mirenda, P. (2005) Augmentative and Alternative Communication; Supporting Children & Adults with Complex Communication Needs (3rd Edition) Baltimore: Paul H Brookes Publishing Co.

Byrne, J., (2013) Autism and Social Media: An exploration of the use of computer mediated communications by individuals on the autism spectrum, University of Glasgow Chancellor’s Fund, Student Project Report FINISH THIS REFERENCE WITH WEB PAGE

Cafiero, J. (2005) Meaningful Exchanges for People with Autism; An Introduction to Augmentative and Alternative Communication, (MD: Woodbine Inc

Cafiero, J. (2008) Technology Supports for Individuals with Autism Spectrum Disorders, Technology in Action, 3, 3, 1-12

DeCurtis, L. L., & Ferrer, D. (2011). Integrating mobile technology using a family-focused approach. CSHA Magazine,41, 1, 10–11, 25.

Howard, S.C., Laubscher, E.H., Schlosser, R.W., Flynn, S., Sorce, J.F., Abramson, J., (2012) Applying Technology to Visually Support Language and Communication in Individuals with Autism Spectrum Disorders, Journal of Autism and Developmental Disorders, 42, 1228-1235

Kagohara, D., et al (2013) Using iPods and iPads in teaching programs for individuals with developmental disabilities: A systematic review, 34, 147 – 156

Mirenda, P. (2001) Autism, augmentative communication, and assistive technology: what do we really know? Focus on Autism and Other Developmental Disabilities, 16, 3, 141- 151

Author Bio

Clare Hudson is Speech and Language Therapy Manager at St Paul’s Hospital and Special School, Dublin.

Geraldine McCabe details her experience of how the Irish education system is failing our children with Intellectual Disabilities. This article was originally a submission by Geraldine McCabe to the UN Day of General Discussion (DGD) on the right to education for persons with disabilities, held on 15 April 2015, at Palais des Nations, Geneva.

  • Geraldine McCabe writes to the United Nations about Inclusive Education.
  • Her daughter Shannon has Down Syndrome.
  • Geraldine sees difficulties for children with special needs in getting the opportunity to develop and contribute to society.
  • Shannon wasn’t allowed to take part in regular activities in school.

Introduction

My experience relates to my daughter Shannon- Shannon has Down Syndrome and her experience highlights the difficulties children with special needs have in getting the opportunity to develop and contribute to society.

My experience with Shannon is that the school system is unable to see past her condition to the vast wealth of skills and qualities that she has to offer, and that her school has limited opportunities for her by:

  1. restricting the manner in which our daughter could best participate in her Junior Certificate;
  2. refusing to let her take part in Transition Year with her peers;
  3. allowing her only to attend school on a part time basis, thus in effect suspending her;
  4. giving her access to Physical Education for only the last five weeks of the school year;
  5. never allowing her to attend extra circular activities within the school environment;

Children with special needs have a lot to offer, but education and related organisations frequently do not give them the opportunity to either develop the skills, or to get the qualifications, that they need to succeed.

Supporting The Child

One of the main purposes of education is to prepare children for adult life. To me, this means providing the child with:

  • the opportunities to get qualifications they need to succeed
  • the opportunities to develop and expand on the skills and qualities

that they need to succeed

  • the belief that they can make a contribution to society
  • the motivation to make a contribution to society

Providing the child with the opportunities to get the qualifications they need to succeed

A child may have a condition, but they should not be defined by that condition. They have so much to offer and this must be recognised. Frequently their condition, which is one aspect of them, eclipses everything and they do not get the opportunities to study/train for particular qualifications or they do not get the support they need to achieve these qualifications.

Unfortunately, factors such as the cost of providing these supports dictate the decisions a school will make when offering education to children with special needs. The child can be the casualty of this, when they do not get the opportunities that they need, to get the qualifications that they need, to meet their career goals.

Providing the child with the opportunities to develop and expand on the skills and qualities that they need to succeed

As mentioned, children with special needs are defined by the conditions that dictate that  they have special needs. These children can tend to be overlooked in education and training and may not get the opportunities needed to reach their potential. Children with special needs are like all children. They have strengths – these strengths need to be built on and celebrated. The child needs to be defined in terms of their strengths. Often it is not the case.

The child will have weaknesses. Schools need to take note of these weaknesses and rather than treat weaknesses as something negative, schools need to focus on weaknesses as opportunities for development. There may be factors that may work to threaten a child’s development. Identifying these factors is a positive thing but in the schools and training systems, staff can tend to use these potential threats as an excuse to give up. This has certainly been my experience. These factors need to be seen as barriers to development.

But like many barriers in life, there are ways to overcome them. Barriers should not be used as an excuse for giving up. Unfortunately my experience is that they do.

Providing the child with the belief that they can make a contribution to society

Every child has so much potential. However, many professionals in education do not see past the child’s condition, whatever it might be. The child must have belief in themselves. Their self-belief needs to be nourished, and they must be helped to realise that they have so much to offer. This self-belief is a very fragile and vulnerable thing. Staff in education play an important part in making sure that this seed of self belief is nourished, and that the child sees that he or she has a lot to offer.

Providing the child with the motivation to make a contribution to society

Following from the previous comment, the child needs to believe that he or she can succeed. Children can, if they are given the belief and faith. The school must have faith in the child. If it doesn’t, the child will not. Unfortunately, this was the case with my daughter. She has had countless barriers placed in front of her. Countless professionals in the education system have written her off and it is an ongoing struggle to offset the damage caused by this.

Observations on the Southern Irish Education System

In addition, I would like to make the following points about the infrastructure/system behind all this:

  1. There are many supporting organisations whose overwhelming concern is self-interest
  2. I would question the value for money benefit of these organisations
  3. The complaints/advocacy system does not work
  4. The system of support has ground to a halt in red tape
  5. The financial and emotional cost of advocating for your child is overwhelming

There are many supporting organisations whose overwhelming concern is self-interest, and there is no accountability or transparency from within the state system.

Indeed it appears that the Irish state are prepared to spend a huge amount of resources to make sure that a wrong continues to be a wrong rather than reviewing and amending  systemic failures within in the system. This of course ensures that civil servants will continue to be kept employed within a dysfunctional system, and that voices like my daughter’s will continue to be ignored and disregarded. After all, who really cares about the voice of a person with special needs, when it comes to their education? Inclusion is working after all!!!!

I do note that there are organisations set up to support children with special needs, but due to the nature of their funding, these organisations are more concerned with using their resources to get continued funding. There is no stability in this sector. Staff are recruited on short-term contracts, and there is no continuity. This has a very adverse knock-on effect on the quality of service delivered.

I would question the value for money benefit of these organisations

Vast amounts of money seem to be spent on services, but none of these resources seem to cascade down to the service users. Service users need career advice. They need to access training. They need to be listened to, and they need to be assisted to believe that they have a lot to offer. This does not happen.

The complaints/advocacy system does not work

I have tried to address deficits in the delivery of services, and it is very clear to me that the systems do not work. They are weighted in favour of the system, and the people in the system know how to use the system to fend off complaints. I believe that the only way forward is to streamline the system of educational supports, and simplify pathways leading to the related supports, to foster an individual pupil-centred approach.

However, my experience tells me that this approach will not take place in my lifetime and for children like my daughter, the failure of the education system has defined her – instead of being a meaningful member of her community, she is condemned to always being viewed as an outsider, with no currency value.

The system of support has ground to a halt in red tape

Parents wishing to make a complaint are made to jump through administrative hoops. Staff use jargon, procedure and avoidance of responsibility to stop or slow down the complaints process.

The emotional cost of advocating for your child is overwhelming

When a parent makes a complaint, he or she is fighting a system, and can be overwhelmed by the sheer size and scale of the system. It’s a case of David versus Goliath, but unlike this tale, it is the gargantuan system that inevitably wins. Parents are eventually worn down from fighting the system, and make a pragmatic decision to give up.

Conclusion

Schools and training organisations have a pivotal role in ensuring that children are prepared for adult life. This means we must provide children with the opportunities to get qualifications, to develop and expand on the skills and qualities that they need to succeed, and the belief and motivation to make a contribution to society.

Also, we need a re-pointing of these organisations’ direction and motivation, to place the student at the centre of their priorities, and improve value for money. We must overhaul or replace the complaints/advocacy system, and remove the bureaucracy and red tape surrounding support systems. The financial and emotional cost of advocating for your child is overwhelming for parents, and in this regard, schools ‘could do better’. A lot better.

Mick Teehan introduces us to one college student who is realising inclusion and achievement in education.

Stephen Lyons is an active and popular student who has an intellectual disability in Tallaght.
Most peole take for granted that college is their right but for Stepehn and people like him things aren’t so easy.
Film-making is his passion and he hopes to learn as much as he can about the industry to improve his skills.
Stephen has a mentor called Lucy who supports him in class.

Meet Stephen Lyons, a student at the Institute of Technology Tallaght (ITT) who has travelled his own unique and difficult path towards achieving his goal of attending college and further developing his passion and skills in the area of Creative Digital Media. Stephen is highly regarded by his fellow students and lecturers alike and is described as being an active, contributing and popular student. However, his presence on campus is unfortunately the exception rather than the rule, due to the fact that Stephen has an intellectual disability. It is as a result of his diagnosis that Stephen has had to overcome a myriad of obstacles placed in his way, a fact that is not lost on his non-disabled peers, most of whom assume third level education to be a fundamental right afforded to all citizens.

At present in Ireland, less than 5% of individuals with a mild intellectual disability under the age of 35 have any type of formal educational qualification at all. Compare this with over 80% of the general population who, upon completion of their Leaving Certificate, will access either higher education or further education institutions. It has long been the case in this country that when individuals with an intellectual disability reach the age of 18, they are fast-tracked into a life within the confines of an increasingly overburdened health system. The fundamental right to access third level education, vocational training, adult education and lifelong education (as enshrined in Article 24 of the UN Convention on the Rights of Persons with Disabilities) is denied  to this already marginalised demographic.

It is internationally recognised  that lifelong learning is an essential requirement if the full participation and inclusion of people with intellectual disabilities is to be achieved. There is considerable international evidence to suggest that outcomes are greatly enhanced for people with intellectual disabilities who attend third level education. These can include significantly increased social networks, attaining paid & meaningful employment, enhanced self-esteem and self-identity, as well as the obvious improvements in an individual’s quality of life that the attainment of a formal qualification brings.

Upon leaving school at the age of 18, Stephen attended WALK’s Real Life Training Programme. This programme supports school leavers with intellectual disabilities to build their capacities within their local communities across the key areas of education, employment and personal development so that they may achieve their own self-determined objectives across these three domains. Real Life Training students such as Stephen are supported to develop and enhance their talents & opportunities for personal growth across a four-year individualised programme, which culminates in their transitioning out of the Health system and transferring either to paid employment or further education. The core elements of Stephen’s own transition plan was to develop his skills in the area of film making so that he can achieve his ultimate goal of securing employment in the film industry.

Stephen has long identified film-making as his passion and it is his dream to forge a career in this exciting but extremely competitive sector. He was supported in identifying a third level education as the obvious route towards enhancing his employment prospects, as well as developing his already considerable talents into genuine expertise. ITT’s Creative Digital Media Degree course appeared to have the ideal mix of practical and theoretical elements that would enable him to harness the knowledge and skills necessary to determine his own future.

Speaking of his time so far at ITT, Stephen says that he has really enjoyed meeting lots of new people who have been extremely welcoming and friendly. Regarding his upcoming enrolment on ITT’s Creative Digital Media course, Stephen adds “I’m hoping that I’ll learn some great new movie making skills. I hope to learn about green screen techniques and stuff like that as well as learning more about editing and sound so that I can use these skills to develop my movies”. Stephen adds that next semester he will be joining the drama society in ITT – he’s hoping to develop even more friendships through his involvement in this aspect of campus life.

WALK (http://www.walk.ie/), based in Walkinstown, Dublin 12,  is  an innovative, forward-thinking organisation whose mission is to empower adults with intellectual disabilities to live meaningful and self-determined lives within their community. WALK have developed their own approach to service delivery through their PEER mentoring programme. Peer-mentored support ensures that students such as Stephen can be viewed as pioneers that raise expectations, smash preconceptions and encourage other students with intellectual disabilities to achieve much more than was previously thought possible.

Sian Thompson from WALK, who supported both Stephen and his PEER mentor Lucy highlights the value of this model of support:

“When Stephen started at ITT he was nervous as he had no experience of higher education and wasn’t sure what to expect. Stephen’s nerves were quickly reduced by the excellent support he received from the outset from Lucy”. Sian adds that “Lucy supported Stephen on exactly what he needed to get to grips with the course (mainly note-taking), and supported Stephen to get to know other students in the class.

“Being a student from the College herself, other people from the course saw Lucy as a student, as opposed to a Support person. Lucy was also well versed in note-taking during lectures – so provided highly effective education-based supports too. Lucy’s support was invaluable in enabling Stephen to get to know and make friends in his class, to get involved in the broader life of the College, and to succeed in his first module within the College. Collectively this support has also enabled Stephen to gain in confidence, to build his skills to navigate the College campus, and the skills to follow his College timetable”.

Margaret Fingleton, Lecturer and Placement Coordinator at the Department of Humanities in ITT underlines the broader benefits of the programme:

“It was a very progressive piece of work to be involved with. As the placement supervisor for Social Care Students, I see this type of work an indication of where social care is heading and how important this type of learning is for the students. The piece of work that the student ( Lucy) undertook is underpinned by the social model of empowerment, inclusion and rights-based practice. The benefits were far-reaching, in that the college benefitted from having Stephen attend, students were open to supporting Stephen being part of the college community, staff were challenged in how best to support the initiative and the student that supported Stephen got the opportunity to be involved in a new and exciting piece of work”.

It is widely agreed that the fundamental right of people with intellectual disabilities to access third level education is a burning issue that can no longer be ignored. Both ITT and WALK share the same core values of developing inclusive, innovative services that ultimately support and empower individuals to be the best that they can be.  Both organisations recognise that the requirement for an inclusive model of Third Level education is gathering pace, and are working towards that.

Author Bio

Mick Teehan is Day Services Manager at WALK.

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Deirdre Corby of DCU explains how a new module draws teams of individuals together to work on projects specifically focused on improving and changing services for people with intellectual disability

People with intellectual disability are beginning to find opportunities opening up in post-secondary and third-level education. Some institutions have been offering courses for a number of years, with specifically designed programmes being the most common. More recently more mainstream options are being developed which encourage all students to study together with awards achieved at different levels.

A module is a unit of education that allows its participants to explore one important area of life. In the module being explained in this article, we look at how three ordinary stakeholders of an intellectual disability service can bring about service change. Students who have attended this module in Dublin City University have reported feeling empowered to bring about changes and improvements in their services.

The ability of this module to build capacity in individuals and services is supported by the evidence from informal and formal feedback of students and service providers and reflects the policies that are currently driving national and international practice changes. This module gives a voice to people with intellectual disability, family and ordinary staff members as they achieve personal and team goals. Based on early evaluations and feedback, it seems fair to say that this module can make real practical changes to the lives of people with intellectual disabilities who attend the services that have been involved in this project.

This module brings together teams of three people to work on a service improvement or change project. Teams consist of a staff member, a person with intellectual disability and a family member (not connected to the person with ID). There is equality among the team members, encouraging them to develop a collaborative attitude throughout the project. Called ‘Improving Service with Cooperative Learning’, the module teaches the students how to work together as a team and research options to complete a project that will make things better in their service.  A minimum of four teams of three people undertake the module each academic year.

Team

Because the service is held in common by all participants in the team, they all have a stake in improving or changing things for the better. While teams apply together to Dublin City University to take the module, all students must make individual applications which are considered by the academic team. All students are registered with the university, have access to all facilities and receive a student card valid for one academic year. Informal learning (learning gained through the experience of life) is equally valued as formal education. One person put it in her own words, saying: ‘do you mean because I have lived in residential care for twenty years I know as much about this service as the staff?’

Influences

A significant influence to the development and maintenance of this module has been the commitment and support of a steering group which involves service providers, family members and representatives of advocacy organisations such as Inclusion Ireland and the National Parents and Siblings Alliance. When a service undertakes to nominate a team, this is just the beginning for them—they provide funding, and much more. This includes providing a mentor from the service who will facilitate the team to progress their project. In practical teams, this involves a senior member of staff giving their time as well as ensuring the team is provided with the resources required.

The University provides a focus for the educational aspect, while national policy will underpin much of the direction the projects take. Policies that focus on access to mainstream and involving people in decisions about their services are highlighted, and students are encouraged to consider these.

Education

The module uses a cooperative model of education, including practical recommendations made by the students themselves. This cooperative approach requires that students work collaboratively and simultaneously with each other, yet there is an understanding and provision made for individual students’ preferences and abilities. Classes all take place in the School of Nursing and Human Sciences in Dublin City University, where students attend one day a month during one academic year, from October to May. Three university lecturers facilitate the module, each taking responsibility for aspects of educational input and support for teams. Each team is allocated a lecturer who provides the team academic support, in addition to the practical support provided by the service-based mentor. Team teaching is the main classroom method employed—an approach that encourages students to participate in all activities.

Individual and team progress reports are essential elements of each university day and students are offered opportunities to present their ongoing work. Problem-solving within and between the teams is invaluable, providing a unique opportunity for all students to investigate what is positive within other services.

One student, Breda, gives her views and feedback

As a  parent of a child with an intellectual disability, I was part of the team from Kildare services who attended this module. Our team began by picking a unit of 48 people within our services, in which to base ourproject. We asked people and discovered that they would like more choices, more meaningful activities and more community participation. We then used a questionnaire to see the level of interest in expanding an existing community farming scheme and in the introduction of weaving. The result was that approximately 50% were interested in participating in social farming and a similar percentage in learning how to weave.

The team then decided on a two-fold plan for the project—to expand the social farming scheme and to introduce a weaving programme to the unit. We felt that giving these additional choices would address some of the issues raised. After a lot of hard work, many meetings, visits to other service providers, farms and wool suppliers, the project was up and running.

Four people took part in an expanded social farming scheme over a six week period. it is hoped to further expand the scheme to include more people. With regard to the weaving, a table loom and peg loom have been installed in the unit, staff members have been trained in weaving skills and lots of people are weaving successfully. Donations of looms and training of staff by another service provider, the financing of wool by the director of services in Kildare Services and the provision of wool by a well-known weaving company have all helped our efforts with the weaving project. We hope that the projects we started will continue into the future.

Our team found this course very educational and informative. The areas covered by the lectures included the different services available in the area of intellectual disability, social inclusion, project management, leadership, teamwork, various reports published regarding intellectual disability and future proposals in this area. Guest speakers also told of their experiences in arriving at satisfactory arrangements for day and residential services for their family member. A lecturer was assigned to each team and was available to assist the team whenever necessary. This included, in our case, visiting and assisting our team at the service headquarters and visiting the farm and weaving service involved in our project.

While students identified that there was significant, and perhaps unexpected, work in progressing their project, the fact that the projects are their own ideas put into practice has resulted in students not wanting to leave.

Our team feels that the trialogue of a person with an intellectual disability, a staff member and a parent working together to achieve a goal can be a successful way of getting results. We feel that the success of our project as a result of the course at Dublin City University has brought about an improvement in the service we are involved with and has thus enhanced somewhat the quality of life of some individuals with intellectual disability. (Breda Pierse)

Legacy

The overall vision of this project is to create a ‘legacy effect’ of benefit, not only for the students but the organisations or services they represent. A sense of achievement and doing something practical and useful is reflected in student discussions at the end of the module. The university experience too has been very much enjoyed. While students identified that there was significant, and perhaps unexpected, work in progressing their project, the fact that the projects are their own ideas put into practice has resulted in students not wanting to leave. They speak about how they can continue to work together after the module, and friendships are begun and maintained. The ripple effect is felt with individuals, and also within services as staff, in particular, report feeling a stronger commitment and feel this module has helped them to understand what people with intellectual disability need and want from their service.

Conclusion

Past student feedback is really valued and influences improvements on how the next module is run. Anyone interested in applying for the programme, or with queries about it, should contact Deirdre Corby, at DCU (tel: 01 7008524; email deirdre.corby@dcu.ie. Those who have completed the module and service providers who have supported teams to attend are also happy to be contacted.

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by Kathleen Deasy and Sinead Murphy

Introduction

Rights-based statutes such as the Disability Act (2005), the Education for Persons with Special Needs Act (2004) and the Qualifications (Education and Training) Act (1999) have influenced educational provision in Ireland. Parallel to legislation, beneficial policy documents, including the EU Memorandum on Lifelong Learning (2000) and the Learning for Life, White Paper on Adult Education (2000), as well as the Back to Education Initiative (BTEI), endeavour to promote further education options for individuals.  Yet, there are limited tertiary education opportunities available for young adults with intellectual disabilities in Ireland.

Currently midway through its third cycle (2011-2013), The LIFE (Leading into Further Education) Programme provides access to further education for young individuals with intellectual disabilities. This programme was developed in response to an identified gap in provision for learners with intellectual disabilities leaving mainstream second-level school. It is a two year BTEI programme for adults 18-25 with mild to moderate intellectual disabilities and/or with Autistic Spectrum Disorder, with the aim of assisting the transition from mainstream second-level education into further education and training. The pilot programme was launched in September 2007, as a partnership venture between the Health Service Executive (HSE), Dún Laoghaire VEC and Carmona Services. Subsequently, STEP joined the partnership for the following programme cycle (2009-2011) and have continued on the current programme cycle which began in September of 2011 to run through to June 2013. Additionally, other service providers (Sunbeam House Services and Enable Ireland) have joined this partnership approach by contributing to programme content.

The LIFE Programme

Potential participants between 18.25 years of age are referred to the LIFE programme by local services and schools. Participants are expected to be able to travel independently, and to participate and work collaboratively in a group setting. Subsequently, referrals go through an interview process to ensure that the programme is appropriate to the needs of the potential learners. The LIFE programme comprises two parts: the Core Skills programme and the Complementary Programme.

Dún Laoghaire VEC run the Core Skills programme in a mainstream environment in a variety of locations around Dún Laoghaire, Co. Dublin. Classes take place three days a week at DLVEC Educational Support Services in Mulgrave Street, Dún Laoghaire College of Further Education and the Institute of Art, Design and Technology. Participants have an opportunity to achieve a FETAC Level 3 Certificate in General Learning. The curriculum consists of core skill subjects such as communications, personal effectiveness, mathematics and computer literacy. Elective subjects include drama, intercultural awareness, health-related fitness and self-advocacy. Tutors use innovative teaching techniques and creative assessment methodologies in order to give the learners the best opportunities to demonstrate and evidence their learning as required by FETAC. It is important to note that in instances where learners did not meet the assessment criteria in a given module, tutors were able to adapt the programme to meet individual needs, thus enabling learners to improve their competencies in key areas, even if accreditation was not possible. Thus the focus shifts to the individual level and accommodates the needs of learners, first and foremost.

Along with the three days of FETAC classes, the Complementary Programme offers additional classes. Historically, Carmona Services and STEP were responsible for the organisation and delivery of the complementary programme, because a large majority of participants were referred from their services. Recent focus has shifted to classes being offered by a variety of service providers in an effort to share expertise and resources. In contrast to the FETAC Core Skills element, the Complementary Programme aims at a more holistic approach to learning and focuses on social and life skills.  This is reflected in such classes as the friendship programme, healthy eating, cooking, student representation, work skills, literacy, newsletter, current affairs and conflict resolution. As an example of the focus on participation in the community, one of the programmes, Streetwise, is delivered jointly by Carmona Services and the Garda Siochána. It offers an awareness of safety and protection in the neighbourhood. Additionally, one of the most positive outcomes to date on the Complementary Programme is the participation by the learners on Ireland’s National Award Challenge, the Gaisce Bronze President’s Award.

Participants and outcomes

Seven participants took part in the first programme cycle in 2007-2009. Three of the seven achieved full Level 3 Certificates in General Learning with the remaining achieving a number of minor awards. After completion of the LIFE programme, four of the participants went into paid supported employment, with the remaining three participating in further educational options. In the 2009-2011 programme cycle, eighteen learners completed the programme. Approximately half of the participants received Level 3 Certificates in General Learning, even though they did not complete all the required modules. Although, they did not complete the coursework for Level 3 mathematics, some of the learners had previously completed this module prior to participating on the LIFE programme, thus, highlighting the flexibility of the FETAC framework. Participants who did not complete a full award, achieved minor awards or component certificates containing somewhere between five to seven modules. The following are the progression routes for the participants on the second cycle: one learner working on the Leaving Cert Applied, nine learners attempting further educational opportunities, and eight on work experience or supported paid employment. In 2011, seventeen participants enrolled on the third cycle of the programme, and they anticipate progression outcomes equalling those in previous cycles.

Conclusion

As a mainstream option for individuals with intellectual disabilities, the learners have remained for the most part segregated within a mainstream setting.  In essence, The LIFE programme could be defined by Zafft, Hart & Zimbrich (2003) as a Substantially Separate Post Secondary Education Model for young adults with disabilities; thus students attend classes with other students with disabilities within a mainstream environment. Although the LIFE programme remains segregated, its benefits lie in the flexibility of the FETAC curriculum that fosters progression opportunities for further mainstream qualifications, which is aptly described by the name Leading Into Further Education. FETAC classes on the LIFE programme are adapted or modified, but assessment is based on standardised ‘specific learning objectives’ (SLO). SLOs are the same for anyone who takes part in the specific FETAC module. Thus requirements for achievement in a FETAC Level 3 module on the LIFE programme are equal to the same FETAC Level 3 class in any further-education setting. This allows greater scope for progression, opening routes to other services within the community (beyond the disability area). Therefore, learners who have completed the LIFE programme may attempt higher FETAC levels and move towards further education opportunities in other mainstream settings.

In addition to the academic achievement, the complementary part of the programme fosters the formation of individual values and attitudes. The learners gain self-assurance, autonomy and learn how to demonstrate self-advocacy through an educational setting. The experiences and personal growth of the learners who have previously participated on the overall programme have been extremely constructive. All the learners have demonstrated improved social skills and have exhibited a greater level of independence, self-confidence and personal effectiveness. In adulthood, the opportunities to take part in lifelong learning are critical to self-purpose and ‘personal well being’ (Stodden & Whelley, 2004, p.6).

‘Transition from childhood to adulthood is a defining moment in each person’s life, albeit celebrated diversely across cultures. Young adults with intellectual disabilities especially rely on support to negotiate this developmental stage’ (May, 2000, cited in Hogg & Langa, 2005, p.29). The core of this programme was the development of a model whereby learners with intellectual disabilities would be aided and encouraged through this transition. Likewise, the merits of this innovative learner/Person-centred programme were acknowledged when they received (in 2009) an AONTAS Star Award in the Nationwide Category. Most importantly, the sense of having had and enjoyed the ‘college experience’ is expressed by many who have completed their two years within the programme.

Previous learners have commented: ‘Everything has changed for me since I came to college. I am more independent and confident.’ ‘I have learned about exercise, health, being safe, to respect people and how to be calm and patient.’

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Damian White reflects on the impact on children of the cutbacks on SNAs in our primary schools.

I was sitting in my noisy old Opel at a red traffic light in Castleknock, revving to prevent an embarrassing cut-out in the stylish suburb where I worked as a young teacher. Glancing sideways I spotted Philip, a wheelchair-bound student on the pavement, smiling in his usual cheeky way. He nodded towards the school ahead, while making hand gestures as if he was a young Marlon Brando about to easy ride his Harley Davison across the desert. I responded in kind and, pulling down my imaginary goggles, revved again. Philip, thrilled with the challenge, catapulted his chair forward with a quick gear shift, encouraging me to ‘eat his dust’ as I awaited the light change. Moments later I was tooting the horn and passing him by as he made his steady way. My ‘ hare’ was again overtaken by his ‘tortoise’ at the next traffic lights and by the time I drove into the school car park, Philip was waving at me from the front door. I almost had to queue to ‘high five’ him, such was his popularity among classmates.

Children argued over whose turn it was to help Philip with the daily chores he found difficult. Many wanted him as their ‘best friend.’ He was a regular birthday party attendee, and parents enjoyed the thought that their children had such empathy for their friend whose mobility was so restricted.

Our little race took place more than 20 years ago. Much has changed, and changed again, for pupils and teachers like Philip and me in the interim. Special Needs Assistants, once as scarce as TDs at a junior ministers Dáil presentation, increased and multiplied in numbers until one.in.three adults in schools were so employed. Kathy Synnott and other campaigners on behalf of children with special needs raised awareness of issues and gained rights through the courts and the ballot box. Applications for SNA and resource teaching support were almost assured of approval once the criteria were met.

I can recall one class in a local school from around the millennium where a mainstream class teacher competed for space with 6 SNAs in a classroom, each assigned to an individual child. Some schools had more SNAs than teachers on staff.

Before the Celtic Tiger came tumbling down the tree, all education partners realised that change was necessary. The Department of Education and Science (as it then was) sought to limit SNAs to a maximum of one per classroom. As the shock of the banking collapse took hold, the same tree was attacked from the bottom for its’ low hanging fruit—the recent and rapidly expanded number of SNAs. A limit of 10,365 employees was imposed on the service. Whether an applicant child would be granted support was dependent on that figure not being breached. SNAs were now shared between pupils, not always in the same class. Many were granted reduced hours.

An old teacher once advised me that a child whose only talent is hammering nails should have the opportunity to do so in school. With this in mind, I have always found it important to find out, through talking to and observing the child, what they enjoy and what they have a talent for, before giving them all possible opportunities to display their ability.

My young friend Philip, I’m sure, has gone on to have a happy and productive life, though I regrettably can’t confirm it as I too moved on soon after that. Children I have since encountered with similar disabilities have, by and large, enjoyed similar degrees of popularity. By coincidence, as I write, RTÉ News is carrying the story of Killian MacDonnell’s achievement in overcoming the joint disabilities of profound deafness and Down Syndrome to pass his Applied Leaving Certificate. His achievement is celebrated by everyone associated with him, including extraordinary SNAs and teachers and his peers who regard him so highly.

As popular as a child with obvious physical disabilities may be with peers, the opposite frequently applies to children with ADHD, ASD, ODD or Aspergers Syndrome. These are the children who are suffering most from reduced SNA numbers and the 15% decrease in allocated resource hours. When children with non-physical disabilities have SNA support, it is usually applied in a way that helps disguise the intended beneficiary, particularly in junior classes. Often, children in the class are completely unaware that the extra adult is assigned to anyone in particular, such is the subtlety and professionalism the two colleagues bring to their work.

The criteria for granting SNA support now effectively limit the service to those with extreme physical disability or those adjudged by a clinical psychologist to be a danger to themselves or others. Critically, this leaves many children with a non-physical disability outside the loop. Their condition may involve a lack of social skills, an unwillingness to share or cooperate with others, a propensity for over-reacting to the least stimuli, positive or negative, or a lack of concentration in class. This can lead to increased need for correction by the teacher and frustration for the children themselves. Where a child with ADHD over-reacts on a regular basis and upsets or strikes another child, figuring out if there is bullying involved and which child is the victim can be a complex issue for the teacher. Is the child who strikes out when ‘his buttons are pushed’—a bully? If the same children continuously provoke and are lashed out against, where lies the greatest fault? In such cases, it is not uncommon to have both sets of parents at the principal’s door, screaming ‘bully’ at the other party.

A child who loses their temper easily through no fault of their own and acts inappropriately towards another child quickly becomes unpopular with peers, if there is no obvious physical reason to suggest that they are in any way different. After a number of such incidents, peers become openly hostile towards such a child, accentuating the problem. Parents ask for their child to be moved away from the child they consider disruptive, adding further issues for the teacher. Many of these issues could be countered by having an SNA available. However, access to SNA support for such children may now be no more than 15 hours per week, leaving them over 13 hours to fend for themselves.

So, how do you integrate children with special needs into mainstream schooling, especially in these tight times? Schools with ASD units take a gradual approach, introducing integration for subjects such as visual arts, religion (where appropriate) and PE, with academic subjects coming later in the process. Schools with sensory and cooking facilities sometimes bring in the mainstream classes to use the facilities along with their autistic peers. Many schools use a ‘Buddy System’ to foster integration during playtime. School plays and concerts also offer chances to integrate children with special needs. An old teacher once advised me that a child whose only talent is hammering nails should have the opportunity to do so in school. With this in mind, I have always found it important to find out, through talking to and observing the child, what they enjoy and what they have a talent for, before giving them all possible opportunities to display their ability.

In every primary school, academic subjects are but one spoke in the wheel of a day’s proceedings. Children can learn valuable lessons from organising the library, attending green schools meetings, or updating the school’s website or blog. Getting the PE equipment ready for a lesson, rearranging displays, gardening, attending the bird feeders or setting out the GP room for evening functions all contain nuggets of inclusive learning and the potential for self-esteem enhancement. Children with their own vegetable or egg enterprises can design and display advertisements on an assigned school noticeboard, or on the schools website. Differentiation based on each child’s needs and abilities means homework is given in proportion to the child’s ability to complete the task.

Cuts in access to resource teaching and SNAs, as well as crippling reductions in DEIS provision, mean that schools are fighting a rearguard action to maintain a quality of service for pupils with special needs. The Special Education Support Service (SESS) is of huge importance to schools, as they provide an excellent advice, training and back.up to teachers, principals and SNAs. Any cut in this service would be a real disaster for children with special needs and those providing for them.

Daily, schools seek to provide equality of educational opportunity to each and every child. Maintaining this as our ideal keeps us focussed on the job at hand. However, the cuts in service have had a serious effect on equity in the system. Only a restoration of services and a reprioritisation by the DES can ensure that the child with a non-physical disability can enjoy and benefit from their school experience as much as my friend Philip.

Author Bio

Damian White is Principal of Scoil Shinchill, Killeigh, Tullamore, Co. Offaly since 1994. In 1999 he was a founder member of The Irish Primary Principals’ Network (IPPN) and has been a member of their national executive ever since. He is editor of IPPNs magazine Leadership + where he also contributes a regular column. Damian is married to Marguerite, who is also a school principal. They have 3 children.

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by Minister for Education & Skills Ruairí Quinn T.D.

Although we are now operating in a time of severe economic difficulty, I want to assure you that both myself and my colleagues in government are committed to prioritising funding for special educational needs (SEN) services. Approximately 15% of the entire budget of the Department of Education and Skills—some €1.3 billion—will be spent in support of children with special educational needs this year.

Despite our current financial challenges, SEN funding has not been reduced and the overall numbers of Special Needs Assistants and Resource Teachers in the school system has been maintained.

Such commitment has been crucial to the provision of inclusive education. This government will continue to prioritise special education provision to ensure that all children with SEN continue to receive an education appropriate to their needs.

One of the things which we can be proudest of in our education system over recent decades is the extent to which the education of children with special needs has been incorporated into the mainstream education system. The majority of children with special needs are now educated in their local mainstream schools, within their community, along with their friends and neighbours.

The advantages of this policy of inclusion are two-fold. Children with special educational needs benefit from being educated in their local schools, and their teachers and classmates have the opportunity to acquire a greater level of awareness and knowledge of diversity and different abilities. Ultimately this has a wider societal benefit.

Some students still require specialist interventions in a special school or class. The Department of Education & Skills (DES), in conjunction with the National Council for Special Education, makes provision for special classes and schools to cater for children who have particular significant needs. These classes have lower pupil teacher ratios, so that more individual attention can be given.

Special classes are established in mainstream schools, to provide for as much inclusion as possible. This school year, 91 new special classes opened, bringing the total number of special classes in mainstream schools across the country to 640-

DES also provides for a range of special schools for children with the most complex needs requiring specialist interventions. In this way, there are provisions available to cater for the full range of SEN.

We will continue with this policy of inclusive education, while also trying to improve special educational services, taking into account best international practices and research.

I wish to assure parents that whatever your child’s level of special need, there is a place for your child in our education system and supports which can be provided, and this will continue.

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by Roy I. Brown

Introduction

The International Association for the Scientific Study of Intellectual Disabilities (IASSID) is the largest international scientific association concerned with research into intellectual and allied developmental disabilities. It has been in existence for 50 years and has members from around the world. The IASSID Academy, set up in 2006, in Maastricht, the Netherlands, is nested in its parent organisation. It has its own Board of 12 members from 10 countries. Its aim is to provide up-to-date research knowledge and practice around the world through workshops, courses and consultations. This article is intended to introduce readers to the Academy as it works to expand its activities around the world.

The Academy’s mission

The IASSID Academy is a young organisation, still in a developmental stage. Although authorised in 2006, its structure and organisation was recognised and approved in the following year and its first workshops and seminars took place later in 2007.

The Academy Board was charged with development and delivery of education and training around the world across various disciplinary areas, and to address a variety of issues across the lifespan of people with intellectual disabilities and their families. The development of the Academy provided an opportunity for a central resource of information and knowledge on issues related to intellectual disabilities provided by an international pool of knowledgeable colleagues as educators and trainers. Potentially the scope of the Academy is considerable, as it is supported by the broad interests and expertise of members linked through IASSID, which is a community of professionals working in the research and applied areas of developmental disabilities.

Two major questions influenced the development of the Academy: (1) how might we translate the research evidence generated by the activities of the IASSID Special Interest Research Groups (SIRGs—groups of colleagues interested in studying particular aspects of Intellectual disabilities)? and (2) how might IASSID increase its engagement with and service to communities in developing countries which lack the research and applied infrastructure necessary to develop evidence-based intervention and support?

Recent developments

Today the Academy provides workshops, courses and consultations at pre-and post-conferences of IASSID and at regional and international meetings. Also of considerable success are stand-alone workshops, seminars and consultations taking place in a steadily increasing range of countries. Certificates of attendance or satisfactory performance are provided to participants.

As the Academy grows, it expects to become increasingly involved and responsive to priority groups, such as, major NGOs, governmental entities and research institutes and universities, amongst others. Critical in this aim is support to frontline and grass-roots developments often provided through local communities. The Academy has set as a primary target consultation and joint ventures with international organisations such as Down Syndrome International, and country organisations including, for example, Confe and Junta de Asistencia Privada del Distrito Federal in Mexico, and field agencies as in Yayasan Sultan Idris Shah, Ipoh Malaysia, as well as university departments and schools as in Ss Cyril and Methodius University in Skopje, Macedonia.

The success of the stand-alone ventures in low.and middle.income countries represents a breakthrough for IASSID, as these have proved popular. Such ventures aim to provide Academy workshops of high standard which meet the needs for education and training for professional and support staff as well as parents, many of whom would be unlikely to attend conferences because of the costs involved.

Another major aim is to provide workshops and seminars in more developed and economically wealthy countries concerned with cutting edge research and the application of that research.

A third aspect of the Academy’s work is to provide advice and support when requested by colleagues attending these meetings who face particular challenging issues in their own countries. As a result, the Academy has started running consultative meetings relating to inclusion, deinstitutionalisation, and the development of services for those who are ageing. These have been held in several countries including China, South Africa and Hong Kong.

The process and content of Academy activities

IASSID’s own members represent a wide range of research and applied expertise which can be translated into local practice by providing information and practical examples of best practices—while ensuring that local needs, knowledge and culture are taken into account.

The Academy always consults with local representatives in the design and delivery of stand-alone courses and workshops and at times it is requested to provided expertise to a wide range of developmental and later-onset disabilities
(e.g. in a consultation in Hong Kong).

Starting in October 2007, around 40 workshops or courses have been carried out in 11 countries, involving around 2500 registrants. Several of the workshops have been linked to international and regional conferences run by IASSID. Others have been stand-alone courses and workshops, most often held by invitation.

The developments to date appear successful in terms of meeting initial demand and country interests. There remains a need to have workshops on research specifically in areas such as ‘assessment and research design and methodology’. The experience of the Academy at the Cape Town IASSID quadrennial congress (2008) and the Asia-Pacific IASSID congress in Singapore (2009) exemplified this aspect of the Academy’s activities. The Singapore 2009 experience of the Academy is a clear example of how the Academy’s packaging can prove most effective when developed in consultation with local groups. The packaging around the Congress in Singapore took advantage of Academy faculty who were attending there and whose travel and related expenses were largely covered by non-Academy resources. All speakers provide their work on a voluntary basis, as do the members of the IASSID Academy. Several organisations have subsequently raised the issue of further courses or workshops and participants from all workshops have requested further involvement from the Academy. Mexico has made a preliminary inquiry for further Academy collaboration, including basic research requirements and needs.

Further reflections

IASSID now functions in a different world than when it was first established some fifty years ago. During that time it has accomplished much, but changes in technologies, communications and the world research environment have opened up new opportunities. One of these is the pressing need for dissemination of research and its application to the developing world beyond Australia/New Zealand, North America and Europe, where IASSID has traditional played an important role. The emerging work of the Academy has revealed a hunger for education and training and nurturing of young researchers and practitioners. The workshops that have been held by the Academy and implemented in the last three years reflect a need in the developing world, which requests and requires up-to-date information on research, application and policy. This, however, is dependent on a cooperative partnership between host countries and the IASSID Academy. The workshops provided in Singapore clearly indicated the importance of this for local professionals groups, as did the workshops and courses held in Malaysia (Ipoh), Hong Kong, India (Visakhapatnam) and China (Beijing) in 2009, and in Greece (Thessaloniki), the Netherlands (Utrecht) and Macedonia (Skopje) in 2010 (prior to the pre-conference workshops in Rome, where we ran 10 workshops covering a broad range of content). Sometimes the workshops are attended by a small number of interested registrants, but most are much larger and some have included hundred of participants, as in Mexico and China. Workshop content ranges through issues of quality of life, exclusion and inclusion, behavioural management, early education, and health. A full list of titles in given on the Academy website.

The host countries are capitalising upon the impact of the Academy’s collective efforts. For example, as a result of the course offered in India, the local parents who attended mobilised and formed an official association which is now engaged in lobbying the government for more services for their adult children and which has developed a support network for its members. In Hong Kong, a collective planning effort is being undertaken to address the needs of their elderly population of adults with intellectual disabilities. In other instances, professionals attending courses have launched new efforts of introducing the scientific method into their agencies’ or organisations’ efforts, and they are basing changes in productivity on empirical practices. These have included follow-up consulting requests around such concerns as de-institutionalisation, inclusion and advocacy.

Final comments

The Academy within IASSID looks forward to working with agencies, both international and country-based, in the development of relevant and supportive programmes of education and consultation around the world. Our services are available through the volunteer efforts of IASSID members whose knowledge and expertise cover all aspects of intellectual disabilities. They represent a wide range of professions in both research and application. The feedback to date has been positive from all sectors. Interest and support have come from agencies and universities, as well as, critically, from parents and allied social organisations concerned with the field of disabilities.

Author Bio

Dr Roy Brown is the volunteer director and chair of the IASSID Academy on Education, Teaching, and Research. Through practice, research, writing, and teaching, he has developed programs in the field of disabilities including University education programs from bachelor to doctoral level. He has worked in several countries, including consulting to UNESCO in South East Asia. He is a lead author in the area of family quality of life and rehabilitation research. Currently he is a member of the Board of Down Syndrome International
He is Professor Emeritus of Educational Psychology, at the University of Calgary, in Calgary, Alberta, Canada and Emeritus Professor at the Flinders University in Adelaide, Australia. He currently holds several positions as Adjunct Professor in both Canada and Australia.

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by Una Healy, Ellen Griffith and Karen Mac Allister National Institute for Intellectual Disability, Trinity College Dublin

“Those who work belong, those who don’t are excluded”
(Hutton 1995)

The underlying principles of the work-life programme on the Certificate in Contemporary Living (CCL) embrace a commitment to the belief that everyone, regardless of ability, has the right to full inclusion in society. Given the fundamental role of work in our society, and recognition that being an employee fulfils an integral social role for most adults, the Work-Life Programme, in keeping with the mission of the National Institute for Intellectual Disability (NIID), aims to equip the students with transferable work and social skills to enable them to participate in the workplace.

Structure of the Work-Life programme at the NIID

Throughout the two years of their studies on the CCL course, students at the NIID are required to undertake 100 hours of work experience. In their first year students study a career development module and undertake 30 hours work experience within the College environment. In the second year a stronger emphasis is placed on work experience and the students are required to carry out a minimum of 70 hours work placement within settings external to the College.

The emphasis on practical work experience reflects current thinking in skills learning, where it is argued that most of us learn transferable work skills on the job or in an authentic work environment. It also reflects trends in third-level and adult education where the emphasis is on gaining experience in the field. For many professional qualifications, students are obliged to carry out placements throughout the entire duration of their studies. This combination of the work experience and the career development module on the CCL is referred to as the Work-Life Programme. The primary focus of this programme at the NIID is to provide students with extensive supported work experience. The structure and ethos of the programme is firmly based on the principles and model of supported employment as extolled by the disability movement of the 1980s and 1990s (Stevens and Martin 1999).

Key features of the Work-Life programme at NIID

The Volunteer Job mentoring initiative
A fundamental principle of supported employment is to provide the students with adequate and appropriate support during their placements (Beyer, Kilsby and Shearn 1997). By adhering to this framework we ensure that all the CCL students have a meaningful and positive learning experience throughout their placements. Currently there are 23 second-year and 13 first-year students on the CCL course. In order to meet the challenge of providing all students with appropriate support, we decided to enlist the help of other Trinity students. We were delighted by the response to our request for volunteers and many students enthusiastically signed up to be job mentors. The staff at the NIID then provided the volunteers with training in the principles of supported employment and methods of job coaching. Student volunteers have reported positively on their experience of participating in the job mentoring initiative. An added bonus of the mentoring programme for the CCL students has been the opportunity to broaden their circle of friends and acquaintances on campus. This, in turn, promotes social integration and more enjoyable participation in college life in general.

First-year students placements on campus
As the CCL course is based in Trinity College, the setting provided the Work-Life programme with an opportunity to take advantage of all the facilities of a large third-level institution. There are several cafés, restaurants, shops, a crèche, gym and numerous offices situated on campus. Trinity staff  responded positively and enthusiastically and all first-year students were able to find suitable work experience placements within the College. This strategy continues to support the first-year CCL students to orientate to and network across the campus.

Corporate partnerships
In November 2008, the Trinity Foundation, in association with Irishjobs.ie, held a business breakfast to promote the aims of the Work-Life programme. The event was hosted by the prominent Irish businessman Denis O’Brien, who has been a keen supporter in championing the Work-Llife programme of the NIID. This event proved very successful and allowed the NIID to build relationships within the corporate and business community in Dublin.

Follow-up meetings with some of these companies has given the staff of the Work-Life programme the opportunity to promote disability and employment rights. Another positive outcome has been that students from the CCL course have been invited to make presentations on the Work-Life programme to personnel and HR managers from a number of businesses and corporations within the Dublin area.

The format for these presentations includes the CCL students delivering a PowerPoint presentation on their work-life profile, which showcases their skills and abilities in the area of employment (see Emma McCormack’s work-life profile in this issue). Feedback from these presentations has been very positive, with a number of people commenting on how useful it was to be able to meet the students, see their work-life profile and engage in informal conversation. This format helps to allay concerns and any preconceived ideas future employees might have about providing placements for people with an intellectual disability. As a result the CCL students have ongoing placements with many companies, including Accenture, Irish Rail, Irish Institute of Chartered Accountants, Starbucks and the Radisson Hotel. Through these contacts the Work-Life programme has also sourced part-time paid work for four CCL graduate students.

Future plans for the Work-Life programme at NIID

Despite the present downturn in the economy and the rise in unemployment, the NIID continues to promote the rights of people with intellectual disabilities to participate in the work.force. The value of work and work experience should not only be counted in monetary terms or enhanced skill acquisition, but also in the benefits to the student’s sense of self worth and self-esteem. Similarly, inclusive employment is of benefit to the wider community and has a vital role to play in reducing the segregation of people with intellectual disabilities by promoting a more tolerant and inclusive society.

In conclusion

What the students have said about their experiences:
I loved working with small children I feel I helped them
(Gina Wilkins, Graduate 2008)

People where I worked were very friendly and made me feel like one of the gang. I liked working there
(Jan Mahon, Graduate, 2008)

I have been working in my job in Today FM for over a year now. I love my job and I save my wages to buy presents for my family at Christmas and birthdays.
(Linda Dumphy, Graduate 2008)

What employers have said:
The experience helped staff to become a better team as they worked together to help the student to fit in.
(Jury’s Doyle Hotel 2007)

One of our guiding principles is diversity in the workplace and the team really enjoyed this element of the work placement. It was a real privilege to embrace the principle.
(Starbucks 2007)